Our beautiful, talented smart, witty, healthy child was just diagnosed with Type 1 Diabetes. It was about ten days ago. I refuse to acknowledge the date because I will not let it define our lives or change the way we continue to live. There will be no before and after in our lives.

But I will say that the shock has just lifted. I am still crying daily but the gaps between the tears are getting longer.

My husband and I have debated sharing this on AllThingsMomSydney. We want to keep our child’s journey and personal story personal to them. It’s for them to decide who to tell and when to talk about it. But, we also feel that the time has come to talk about it.

We don’t want other families who may go through this to feel alone. If you are reading this because your child has just been diagnosed with Type 1 diabetes, we are here for you, reach out and we can walk this road together.

The other reason for writing this is to bring it into the open. There is a stigma around diabetes. Type 1 diabetes is an auto-immune disease. Where it came from or why it targeted this little body is a mystery. It isn’t diet or lifestyle it was just a virus that then turned on the pancreases in angry rage. I’ll talk about what this is a little later but for now, know that for our child the reality is that there will be concern, aversion and maybe judgment for something that they had no control over.

Our child woke up one morning as a perfectly ordinary child. By that evening after a routine doctors visit had been pricked and prodded and diagnosed with a life long, currently incurable auto-immune disease.

To look at our child you would never know. You would never guess that their body is fighting to function properly. That the little body has not been able to absorb what is needed for growth and development. That the little brain has been feeling foggy and unable to think clearly. You would never know because our child has just continued to live day in day out in their version of normal.

So in this post, I’m going to explain what Type 1 Diabetes is, what our current day to day looks like, how we found out and then maybe most personal – what this all feels like.

I am not a doctor, this is not medical advice, this is just a narrative of what we are discovering and how we are surviving.

We don’t want pity, we don’t want anyone feeling sorry for us or our child. Definitely not. We just want understanding and compassion for our child and any others in the same situation.

Our child was just diagnosed with Type 1 Diabetes

What is Type 1 Diabetes

Type 1 Diabetes also called Juvenile Diabetes is very different to Type 2 in terms of cause, it has nothing to do with lifestyle.

What is currently understood is that Type 1 Diabetes is caused by a trigger event which then causes the immune system to attack and destroy the insulin-producing beta cells of the pancreas.

Insulin is the hormone needed to get sugar (glucose) into the body’s cells. Without it, the body burns its own fats and in doing so releases dangerous chemical substances into the blood. If untreated, this becomes life threatening.

In the early days where we are now we have to step in for our child’s pancreas. We have to look at how the body reacts to food and exercise and then give insulin to keep the Blood Glucose Level (BGL) between certain numbers. We work on the understanding that insulin + exercise make BGL go down and food makes it go up.

Just diagnosed with Type 1 Diabetes – what does life look like?

In theory

One of the most unnerving aspects of this diagnosis is that you as the parent (or the patient) have to learn how to read your BGL and work out how much insulin to use. I am still petrified of getting the amount of insulin I give wrong.

• Too much insulin and you cause a “hypo” where the body starts shutting down.
• Too little and the body starts releasing destructive chemicals into the blood.

Essentially you are holding your child’s critical health in your hands, and for most of us, without the advantage of a medical degree. Thankfully the hospital was and is a huge support.

If you had told me 11 days ago that I would know anything about this or how to manage it, I would have told you that you’re crazy. But we are slowly getting more confident. In time it will become a normal learned skill, like being able to converse in a second language.

In reality

In practice, to test our child’s BGL, we prick our child’s finger before eating and then 2 hours after that. Also through the night.

We use a little pen and then a machine that fits in the palm of my hand. It’s quite incredible. It’s similar to the process you go through when they test your blood levels before you donate blood.

When I was first handed the little finger pricker and the blood monitor meter I was shaking, I couldn’t bring myself to change the needle because I was so traumatized at the thought of putting that into my child. But, it gets better. 10 days in and it seems normal to me.

At this stage we give our child 4 doses of insulin. 3 called rapid acting that takes effect within 1 to 3 hours and another slower acting one that works through the night. We use a “pen” to inject it in and change the needle ourselves after every use.

This has been hard, injecting your child and causing them that momentary pain is emotional torture. You never want your child to be in pain, let alone be the person that is causing the pain.

At this stage it is hurting our child because they have very little body fat. Each push of the insulin hurts after the initial hurt of the needle. My husband is so brilliant at giving it to our child. He just gets on and does it whereas I am not as certain. I do it because I know my child needs it but I have to remind myself of that every time I prime the needle and smell the insulin.

I loathe the smell of insulin.

Food

Of course food plays a part in this. When you’re just diagosed with type 1 diabetes the intial thought is to cut out all sugar and maybe carbs. This is not the case.

Yes, soda is out and sugar is limited but the most important aspect is eating in a scheduled manner. It’s the only way to make sure the insulin is given at the same times and the careful balance between food and insulin can be kept in check.

In real life, our child eats 3 meals a day with morning and afternoon tea. Once we had recovered from the shock of the diagnoses, the dietitian started teaching us about counting carbs and matching carbs to insulin.

We’re at a point now where we weigh all our child’s food and then calculate how many grams of carbs, sugars, proteins, fiber and fat is in the food.

The other aspect that needs management is sport and exercise. Our children are very active so we have to adjust the food and insulin based on whether exercise will cause the glucose levels to drop.

I won’t lie it’s hard work. Managing what sport and food does to the BGL is exhausting. Especially when you’re up all night testing too. My husband and I are exhausted. By the time 7pm rolls around each day it feels like we’ve run a marathon and we still have to get the kids in bed and try feed ourselves.

But what happened – how did you know?

This is the questions everyone asks.

In our case nothing happened. No dramatic weight loss, no collapse at school. It was a slight change in how much water our child was drinking. My incredible husband noticed it and questioned it as unusual.

What followed was a trip to the doctor, an unusual urine test and then a high Blood Glucose Level which led to an immediate rush to the hospital.

Normally, the symptoms include weight loss, an increased thirst, frequent urination, fatigue and blurred vision. In case you’re worried, take your child to the doctor to get a urine test and maybe a BGL test! Our doctor says 9 out of 10 a child may present with those symptoms and be fine. It’s the small minority who may be diagnosed with Type 1 Diabetes.

How does it feel to have your child just diagnosed with Type 1 Diabetes

The initial shock, the fear and the guilt

Well like any diagnoses it feels like you’ve been punched in the stomach. You can’t comprehend the severity or the magnitude of what you’ve been told. Part of you hopes the doctors have got it wrong, that it’s a freak incident of an incorrect diagnosis. Deep down I think you know that it’s not though.

For the first two days I was just in shock, I would get home from the hospital with one child, having left my other child and husband at the hospital and be shaking. Like coming down from an adrenaline filled experience. I went into automatic robot trying to work out everything that needed to be done, trying to be as practical and organised.

There are tears but more from shock and panic and fear more than anything. Those big ugly crying tears while you try hide from your children so that they don’t panic.

Then there is the fear. If like us you’ve never know a person with diabetes, let alone a child with Type 1 your mind races. You’re trying to understand what is going on, where it came from and what it means.

I kept trying to ask if it meant my child would have a shortened life span or if it was fatal because I just didn’t know. I was also so embarrassed by not knowing this but how can you when it hasn’t ever existed in your sphere of reference!?

And lurking behind all those feelings is the guilt. The dark feeling that makes you wonder whether you’ve done something to cause this or contribute towards its existence. And that guilt coupled with the guilt of not having picked it up sooner.

If you’re reading this and your child has just been diagnosed with Type 1 diabetes know that it is not you. You have done nothing wrong, you could not have prevented this. For whatever reason, this is how your child’s body has responded to something outside of your control.

There is no known way to prevent Type 1 Diabetes, as parents we have done nothing wrong.

And after that?

Somewhere in between this, around day 3, the sadness hits. The hospital psychologist says it’s grieving for the loss of the childhood and life you wanted for your child. You cry because your heart is so sore for your child. Because they will have to deal with this for the rest of their lives. Every day, every decision, everything will be somehow affected by this.

It’s utterly bizarre what makes you cry. Anything can set you off and you start weeping for no reason.

At this point I couldn’t even talk to my husband. To talk to him would be to acknowledge the disease and the impact out loud. Petrified to open up this massive wound that was being precariously held closed. It just felt too big to deal with. It’s also hard when you know that the other person is also carrying the same huge burden and is also struggling. You feel incapable of carrying their emotions and you don’t want to add your thoughts and feelings to theirs.

The burden and the benefit of a Type 1 Diabetes diagnosis is that it requires constant practical management. As much as you want to sit and mourn, you just don’t have the time, there is too much to do. This is especially true if you try to maintain the active lifestyle your child had before being diagnosed. Our child returned to school after a week, picked up the normal sports and school holidays has been as close to normal as possible.

And 10 days later

I’m currently in an okay place, I can talk about it without crying but it’s still raw. I cry but it takes a little more to get me started.

My husband and I are able to chat about it and to look at it from different angles without feeling utterly helpless. We are looking at the option of getting a CGM, a little device that checks the BGL constantly so we don’t have to prick our child as much anymore. And in time a pump to administer the insulin. It will get easier.

Mentally, emotionally and physically we are just exhausted. Its like a graceful swan on the surface who is furiously paddling underneath to keep going. We are trying so hard to maintain normal, to not add any additional changes to our child’s life but that means being constantly switched on. Constantly calculating BGLs, food, exercise, moods, indicators of irritability. Every family activity or outing is planned down to the 10 minutes. It’s also made that much harder as a result of not having grandparents or siblings close by.

10 days in and I know that it’s manageable. It sounds like a lot and yes it’s exhausting but you can do it. Not only because you have to but because it becomes part of you. Your desire to protect your child flips a switch in your brain and you become the medic, dietician, planner that your child needs to survive.

How is my child handling the diagnosis?

Most children diagnosed with Type 1 diabetes, a similar age to our child, feel unwell. Our child did not. For those other children there is a correlation between being pricked and injected and then feeling better. For our child, they don’t understand why we are hurting them when they weren’t even sick to start with. But, seeing the physical and behavioural changes we know that our child is doing better with the introduction of insulin.

For our child the times that have been hard are:

1. When the reality hit that this is for the long term.
2. When it became clear that injections were necessary even at school.
3. Friends were scared that they could catch it. Our child did not want us to tell their school mates but after discussions we approached the school mates’ parents and a lot of positives came from those discussions.

Overall, our child is doing so well. Better than we are probably. Back to school after 1 week for half days, back to sport soon after that and proving to everyone that they are just the same as they were before.

This is the life that is destined for them and they will never know any different. We have faith that resilience and strength and fortitude will follow.

We are just so very very proud of our child for facing this head on. meeting it with all the courage and understanding of someone much older. If you are reading this my darling, as an older teenager or adult know that we love you so much and are inspired by your tenacity and continued strength. You are capable of more than any of us could know possible.

More Information from reliable sources

Talking to Children

If you want to talk to your children or your children’s friends about Type 1 Diabetes there is a good Youtube video from Diabetes Australia called Professor Bumblebee.

Good Medical Sites

Reliable medical advice is always hard to come by. The internet is populated by personal accounts (like this) on any medical issue.

Here are some good sources for information:

1. Royal Children’s Hospital
2. Diabetes Australia (for Type 1 and Type 2)
3. JDRF
4. NDSS (the Australian government diabetes scheme)